a rabble-rouser

Category: books

Since my daughter moved out, she’s been alone on her day off from her job at the bakery. She can’t afford Internet or cable, and there’s only so much cleaning one can do in a 500 square foot garage suite. The other day, she unexpectedly told me, “I want to read more books.”

This is so old school and I was delighted. I gifted her with The Gone Girl by Gillian Flynn and she’s happily giving me daily plot updates.

Since I dumped Facebook, I’ve been reading more lately too. Here is what has passed through my book pile:

Close your eyes, hold your hands by Chris Bohjalian – A wayward teen, on her own after a nuclear disaster. Compelling and sympathetic.

House in the Sky by Amanda Lindout and Sarah Corbett – I was scared to read this, but someone I trusted recommended it. The true story about the kidnapping of a journalist. Terrifying but surprisingly full of hope and faith.

I am having so much fun here without you by Courtney Maum – well, I read it, hoping to warm to the protagonist. But I hated that guy right to the bitter end.

The Vacationers by Emma Straub – wow, this was lite (not even light), so I read it, yes, on vacation. A family drama set on a holiday in Spain.

The Year She Left Us by Kathryn Ma – another story about troubled girl, told from various points of view. At its heart, it had the interesting theme of international adoption.

The Husband’s Secret by Liane Moriarty – I was embarrassed to have this in my book pile. The cover is cutesy, and all covered in pink flowers. Once I got over my pretention about this book, I liked it. It was set in Sydney, and was a pleasant read with three different story lines that slowly begin to intersect in mostly unexpected ways.

Louise Kinross is the editor of the fabulous blog from Holland Bloorview Kids Rehabilitation in Toronto. It is called Bloom. Louise has always been very supportive of me as a writer, and I’ve been interviewed and published in Bloom a few times. In fact, she published The Invisible Mom, which was picked up by Huffington Post, and from there I was contacted by the editor of the New York Times Motherlode blog last year, who was interested in a query from me. From that, Far From My Tree was published on Motherlode and printed in the Sunday Times newspaper last December. Does it get any better than that? That was pretty awesome, and Louise had a direct hand in that.

Louise is very connected with all that’s going on with kids and disability in the world. I’ve had the good fortune to meet her, and present with her at meetings and conferences. I respect her mightily, and see her as a champion for the written word and our secret world as parents of kids with differences here in Canada.

She somehow found Diogo Mainardi, who wrote a book about his son Tito called The Fall. Louise interviewed him for Bloom, and the transcript results are chock full of wisdom about having a child with a disability.

I often feel so stuck in my thinking: struggling about Aaron’s lack of friends or on the warpath to make change in the world for future generations, or outraged about injustices, or disappointed by organizations who pay lip service to family volunteers. You’ll see those themes throughout my blog, along with my pithy attempts to be positive, remember the joy, and stay in the moment.

Diogo’s words suggested a deep acceptance of both his son Tito, and the reality he faces as a boy with cerebral palsy in the world. The reality of the world is something that I have not yet learned to accept. I see other parents raging about systems, and people…and I know that I do this too. However, I also live in fear of becoming a mean and resentful mom, which is what is going to happen if I don’t adopt a more Buddist attitude about the way things actually are. As my own father likes to say: What is, is.

I’ve been thinking a lot about Diogo’s blunt words about his son, including:

Obviously, he has no friends. Everybody likes him and is very tender to him, but he’s 13 now and the 13-year-old boys and girls are not ready to listen to someone who speaks in a slurry way or has difficulty walking from one place to the other and is much slower. This is something that we can’t impose.

That response hit me like a bag of bricks. He’s right, of course when he says that you can’t force tolerance.

And, about changing the world, he says:We cannot try to overreach. It’s so frustrating to try to solve every little animosity and instill in other people respect of a disabled child. It’s too big a war.

Diogo has taken a very smart approach to his book. He acknowledges that nobody is going to read a book about cerebral palsy (except other parents of children with cerebral palsy). The Fall connects his son’s story with the great, common stories of the world, and has wide appeal. As he says, we need to enlarge the subject. Andrew Solomon did that with his Far from the Tree – while his subject is kids with differences, I know his book has been picked up by parents of typical kids, non-parents…he has wide appeal with his approach of masterful storytelling mixed with research.

My hope for this little blog, and my future publications, is that I’m not just a ‘special needs mom’ – I’m seen as a woman, a wife, a mom of three. I’m struggling with an emptying nest, having a punk rock drummer for my eldest son, finding sanity in a technology-filled world, living in a city I don’t really like, running my own business, and yes, being the mom of my last remaining child at home, who happens to have Down syndrome. I also love food, movies, travel and books. I’m more like you than you might think. And it is through those connections – that sameness – that we are going to foster understanding and compassion of each other’s lives.

(Thank you, Louise, for this super interview with Diogo Mainardi, for championing fledgling writers, and for always making me think).

All My Puny Sorrows is the latest novel from Miriam Toews. My two degrees of separation from Miriam is that she is friends with my good pal and writer Melissa Steele. I met Miriam once when she was playing pool in a bar on Corydon Avenue in Winnipeg. (It’s a tenuous connection with fame, but that’s all I have).

Corydon Avenue is featured in her newest book, as are a number of Winnipeg landmarks like the Assiniboine River, and a thinly veiled hospital on the French side of the river. It is at this hospital that Miriam’s protagonist, Yoli, visits her sister Elf. Elf has been admitted to the psychiatric ward after a stint in the ICU following a suicide attempt.

This is a sad book, touched with desperation and humour. Yoli wants her sister to live, or at the very least to die in peace and surrounded by loved ones. Elf is determined to die by suicide. Elf’s will is strong.

I was struck by the passages in All My Puny Sorrows that recounted experiences in the psychiatric ward. The encounters with the nurses and psychiatrists were, for the most part (and ironically), dark and depressing.

There are restrictive visiting hours for families and a ban on food. The nurses at the desk serve to stand guard to grill visitors. The only reprieve from the hardened staff is one psych nurse named Janice, who wears light pink track suits and tangos on her days off. She also doles out important hugs to family members.

Otherwise, the time and the people in the psych unit are bleak. The attending psychiatrist refuses to treat Elf and her ‘silly games,’ nurses are experts at avoiding eye contact with pleading family members, and finally, it is the uncaring system that lets Elf and her family down in the end.

This is a work of fiction, so it is fair to question if the treatment of the mental health experience is accurate. But All My Puny Sorrows is also a deeply personal novel for Miriam Toews, as her own sister Majorie died by suicide four years ago. So yes, I would assume that there is more than a glimmer of truth in her words.

Half way through the book, Yoli issues a plea for what her sister needs from the mental health professionals entrusted in her sister’s care:

“Imagine a psychiatrist setting down with a broken human being saying, I am here for you, I am committed to your care, I want to make you feel better, I want to return your joy to you, I don’t know how I will do it but I will find out and then I will apply one hundred percent of my abilities, my training, my compassion and my curiosity to your health – to your well being, to your joy.”

Isn’t that a beautiful sentiment for all health professionals? But that never happened for Elf, or a multitude of other patients who slip through the health system not feeling cared for. For Elf, that crack in the system leads her to her end.

All My Puny Sorrows is an examination of a sister’s bond, a family’s love for each other and growing up Mennonite. It is also a mournful commentary of our broken mental health system. I am grateful for those who apply their compassion and training to their patients’ well being. I personally know of three exceptional nurses who work in mental health – Lisa, Heike and Laurene – how do we bottle their passion for their patients, and share it with their colleagues?

For those who don’t, or can’t, demonstrate compassion – can we educate people to care? Can we teach empathy? Is there a way to open up a heart to understand the perspective of who may be the toughest patients of them all – those with mental health illness?

I don’t know the answers to any of these questions, but I’ll keep preaching about kindness and compassion to students, health professionals, and anyone who will listen. All My Puny Sorrows is a stark reminder that we need to keep trying to find the answers: for all the Elfs of the world, and for the thousands of patients in Canada who struggle with mental illness every single day.

O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She’ll make her way.

Her video for the song includes a young lady with Down syndrome. It isn’t a surprise that the Down syndrome community has adopted Wonder as its anthem. I mention this song whenever I visit with a family who has a baby with a new diagnosis of Down syndrome. This song helped me in the dark, early days of Aaron’s diagnosis, and I hope that it brings comfort to others too.

There is also a book called Wonder, by R.J. Palacio. I’m about two years behind, but I finally finished it. Aaron saw the cover and said, ‘hey, we have this book in our school library, too!’ I wish that all teachers and children would read it. It is an important book.

This is a book about a boy with a facial difference who is in Grade 5. Palacio presents different chapters from different perspectives – the boy, August, his friends, and his sister. (How I desperately wanted to read from his mom’s point of view, too). The author manages to capture how it feels to be different. And while the book ends on a tidy note, the theme is the struggle for acceptance, and the kindness and cruelty of children (who often don’t fall far from their parents’ tree).

My favourite quote came from August’s sister’s boyfriend, Justin. He talks about the meaning of differences:

no, no, it’s not all random. if it really was random, the universe would abandon us completely. and the universe doesn’t. it takes care of its most fragile creations in ways we can’t see…maybe it is a lottery, but the universe makes it all even out in the end. the universe takes care of all its birds.

I love watching movie trailers. I am good at writing queries for publications and abstracts for conferences. I guess that’s why Twitter intrigues me – edit, people and edit some more until you are at 140 characters. I’ve always concluded that it is more challenging to write less than more. That’s why getting paid by the word is kind of silly.

Every so often, I get a fire in my belly that I cannot extinguish. My guide to to the Revolution is the book Getting to Maybe.

This book is for anyone who has ever thought: THIS IS NOT OK. I NEED TO DO SOMETHING.

I re-read my dog-eared version of this book when I lobbied (along with four other families) our local children’s hospital to create a Family Council. (It worked. Over four years later, it is going strong). I referred to Getting to Maybe when the Nurse Coordinator at our Down syndrome clinic was slated to be laid off, and, along with a group of awesome, equally outraged families, we created an advocacy campaign called All Kids Deserve Health Services. (It worked. The government reinstated her position).

I’m currently outraged that families who have children with Down syndrome can’t access public speech and language services. And about the sting of discrimination that people with disabilities experience from our society.

The question is: what am I going to do about it?

Getting to Maybe will show me the way.

We ask ourselves, ‘Who am I to be brilliant, gorgeous, talented, fabulous?’ Actually, who are you not to be? Your playing small does not serve the world. There is nothing enlightened about shrinking so that other people won’t feel insecure around you…and as we let our own light shine, we unconsciously give other people permission to do the same. – Marianne Williamson

I was thrilled when my abstract for speaking at the World Down Syndrome Congress was accepted earlier this year. So in mid-August, my husband and I packed up our youngest son, age 6, and travelled to Ireland for the Congress and a subsequent two weeks in Dublin and County Cork.

I’ve chronicled many of our adventures which revolved around food, on Foodie Suz. I also had time to read an entire book (a rarity that I carve out for myself on holidays). This time it was Lori Lansen’s A Wife’s Tale. Lest you think it is like the Canadian version of The Biggest Loser, it is certainly not. A Wife’s Tale is an engaging and compassionate read.It is a lovely book of transformation and post-divorce.

After my first marriage ended, I, too travelled far away – for me, it was to Norway with my two kids. This is a common experience, I think – women searching for home in strange places. Eat, Love, Pray is like that too. Although both those protagonists weren’t travelling with two children under the age of seven. I clearly wasn’t thinking straight.

Take a look at Lori Lansen’s bio page. It is the best bio I have ever read – very warm and personable, and illustrates that our lives really are built around babies and where we live. She provides inspiration for those of us who say about writing: I can’t. I can’t find the time. Lori Lansen just sits down and writes. Because that’s what writers do.